Article by Marina
When I was first joined this community of people with lived experience…… I felt ‘less than’ because I had never been hospitalized. I was embarrassed because I thought that my experience with mental health was not ‘enough’ and I didn’t belong.
It took me a long time to realize that what I went through was indeed valid and I did belong and chose to belong.
I was feeling big waves of despair, all I saw was darkness, a void , non stop crying, unable to express what I felt, there was no sun inside or out, instead of sleeping and eating a lot I switched to not sleeping or wanting to eat much. Nothing was predictable, nothing was familiar. I was scared. I was terrified. ( “ I thought I could never live without your love inside”…..Gloria Gaynor).( No, I’m not going to keep this in.)
I went to the city hospital hoping for a place to sleep and eat. I wanted to be able to come and go and not be locked in or forced to attend meetings. They said that was impossible and that I would have to agree to be locked up. I refused. Now, I know I was looking for a respite place. A place to heal on my terms, no locked ward.
My meds Doctor at that time was a practicing Buddhist and a 12 stepper (?). I had finally admitted that I didn’t feel right. It was the first time I had tried psychiatric (“legal”) medications. After 9 months of trying different combinations and doses of varying medication that were not working it was suggested I do electric shock therapy. Everything I had read about ECT scared me and I refused to do it.
I remember wanting to go in the hospital because I was so very tired and didn’t think I could keep going. I wanted to stop. He said he didn’t think I should go to the hospital because I would get worse.
( ENTER RENE)
We agreed that I would go to a partial day program. In addition, I was to sign a ‘safety contract’, stating that I would not harm myself. I set a schedule for myself that I would follow when I left the daily partial program. My days consisted of going to partial day from 9:00 – 3:00 pm, going for a walk or the library or meet a friend at home and going to therapy, make dinner, watch TV and go to bed. My family and supporters called me daily. Weekly meds kept were at my house, and a friend took out any dangerous material. In time I started to feel better.
Other ‘breakdowns’ ( I now consider these breakthroughs) kept happening. I entered three other partial programs. Because my sister was involved in the de-instituational of state hospitals in the 80s? she
Knew that hospitals would not help me and may possibly make my condition worse. She helped me find another partial, HRI, a place that she helped co found.
My last “breakdown” was in 1999. My sister suggested I go with her to meetings about a new project in western MA. That was how I found WRAP ( Wellness Recovery Action Plan). Slowly I learned about it and began to heal, was trained as a WRAP Facilitator, and began teaching. The WRAP became and is how I live my life today. I have not had any issues? That I can’t handle since then. I am and continue to heal.
I know how lucky I am not to have entered hospitals and thank my sister for that. Two years ago I visited Rose House in New York, a peer run respite program. That was the kind of program I was originally looking for before I started my quest for help. To be supported by my peers, able to rest and …… blah, blah
My memories of this time, “the time of Marina’s pain”, is somewhat different than Marina’s when I consider events but not in the feelings. Witnessing someone I loved for so long go through the darkness left me feeling helpless, powerless, my grief knew no bounds. It awoke the fire-breathing dragons of the past and enraged me. I could not protect her from harm as a child and, now, as an adult I could not hold her pain, shield her from the horrific past shadowing the difficult present.
In my early work in the area of mental health, I had mighty mentors who shaped my thinking on the experience of madness. From Judy Chamberlain and Rae Unzicker I learned the wisdom gleaned as a result of surviving the psychiatric system and the necessity of keeping our brothers and sisters out of institutions.
From my colleagues David Specht, Marylou Sullivan and Michael Kendrick and Debi Reidy, I learned how best to use my position and power to support the voices of people with psychiatric diagnoses. On a personal level, my own journey as a survivor of violence, a woman in substance abuse recovery, and a person whose psych labels continually changed over the years, including the kiss of death diagnosis – borderline.
After many conversations, I asked Marina if I could speak with her therapist, a good person, a well-meaning man, she said yes but “tell me everything that is said”. “Sure.”
I called and first asked if he could have Marina undergo a series of tests assessing her physical health. I knew that at times women’s physical issues are misdiagnosed as “emotional” issues. This is how Marina stayed out of the hospital and looked for healing on her own terms.